Open Wide and Say 'Ahhh...'

At the Tucson, Ariz., home of Matt and Terra Messmer, the day starts at 4 a.m.

Having helped each other through law school and passed the state's bar exam, the Messmers have embarked on dual careers as attorneys. Terra, 26, is in private practice, while Matt, 27, works as a public defender.

To complicate the daily rituals of getting up and preparing for the workday, Terra and Matt are both affected by neuromuscular diseases. She has a congenital myasthenic syndrome, while Matt has spinal muscular atrophy. With medication, Terra maintains enough strength and mobility to help Matt, who has significant weakness in his limbs and uses a wheelchair for mobility.

And part of that morning routine for both is the all-important tooth-brushing ritual. Because, neuromuscular disease or not, oral health — including daily tooth cleaning and regular dental visits — is essential.

Oral health and neuromuscular disease

Steven P. Perlman, an associate clinical professor at Boston University's Goldman School of Dental Medicine, specializes in dental health care for people with disabilities in his private practice and serves as clinical director of the Special Olympics' Special Smiles program.

And while he understands the challenges faced by those with neuromuscular diseases when it comes to taking care of teeth and gums, Perlman suggests that the consequences of avoiding those challenges can be both costly and painful.

"People don't realize that oral health is such an integral part of total health," Perlman says. "Former Surgeon General C. Everett Koop made the comment that if you don't have oral health, you're not healthy."

Poor oral health can lead to infections, pain, difficulty with eating or speaking, poor appearance, complex dental procedures and other problems. In addition, research is increasingly linking diseases of the mouth with cardiovascular disease and with having low-birth-weight babies.

Some people with neuromuscular diseases find that muscle weakness and immobility make it hard to take care of their teeth. A few neuromuscular diseases have specific effects that are hard on the mouth.

For example, myotonic and congenital muscular dystrophies and childhood-onset spinal muscular atrophy can lead to weakness of facial muscles. Particularly during childhood, this can cause the roof of the mouth to form with a higher than normal arch, which may lead to crooked teeth.

Also, if you regularly experience difficulty in swallowing, you may find yourself at greater risk of tooth decay and gum disease, because food and liquids aren't properly cleared from your mouth.

In addition, Perlman warns that some of the medications prescribed to help people manage the symptoms of neuromuscular disease — such as tricyclic antidepressants or drugs used to control drooling — can compromise the health of teeth and gums.

"A lot of those drugs diminish salivary flow," he explains, describing a condition known as xerostomia, or dry mouth. "Saliva flushes the mouth, keeps it clean, lowers the cavity rate and the rate of periodontal [gum] disease."

Of course, people with neuromuscular diseases are susceptible to oral health problems that may have no relationship to their disease at all.

For example, Matt Messmer doesn't know whether his SMA had anything to do with his crooked teeth or not.

"I just know I had to have some teeth pulled, wear braces, rubber bands — the whole bit," he says ruefully.

Good care at home

Not surprisingly, Perlman stresses prevention as the key to good oral health. And when physical limitations make taking care of teeth and gums a real challenge, Perlman suggests using some adjunct preventive treatments.

"There are many preventive aids that can be used," he says. "An adult can still be placed on fluoride if they have a high risk for dental decay. There's a rinse — or it can be topically applied — containing chlorhexidine that prevents plaque from forming." Chlorhexidine, also known as chlorhexidine gluconate, or by the brand name Peridex, is available only by prescription.

Perlman cautions that there's still no substitute for regular preventive care — brushing and flossing at least three times a day.

For those whose muscular limitations make daily flossing and brushing difficult, a conscientious, well-trained caregiver is the key. See "Resources," for some of the products available to assist in this important task.

Matt Messmer compensates for his lack of forearm strength by using an electric toothbrush, propping his arms on the bathroom counter to gain leverage. For those hard-to-reach places, Terra helps out.

The task becomes more complicated if you live alone, or experience frequent turnover in caregivers.

Perlman and others in the field of special needs dentistry have developed a personal hygiene program designed to account for an individual's abilities and limitations. The program includes a comprehensive guide to preventive dental care, listing each step in checklist form and assigning responsibility for each task to the individual or the caregiver.

"Every six months would be the starting point," Jolly says. "Some people need to be seen more frequently. Some would probably not need to be seen that often. But six months would be the starting point."

So how do you find a dentist who will give the care you need?

"Some states maintain a directory of participating dentists that will treat people with special needs," Jolly advises.

"I would say check with your local dental society first." If that doesn't work, "Check with your state dental society, or check with your state's department of health division of dentistry."

You could also ask the staff at your local MDA clinic for a recommendation.

If all else fails there's always the approach the Messmers used when they moved to Tucson from the Chicago area seven years ago. They simply picked up the phone book and called dental offices, one at a time, until they found an office that would accommodate their needs.

"I was really just looking for an office that was accessible enough to handle Matt's wheelchair," explains Terra Messmer.

"We go twice a year," she adds. "The office is very accommodating to us, scheduling our appointments together so I can help Matt transfer in and out of the dental chair, before they get started on me."

While dental work can be done on a person sitting in a wheelchair, most dentists prefer that wheelchair users transfer into the regular dental chair.

"The best thing is always to transfer the patient, because you need light, water, suction, all that kind of stuff," Perlman says. "Plus, you [the dentist] need to be comfortable doing it, too. So we always transfer if possible."

Wheelchair accessibility is just one of the reasons why some dentists are reluctant to treat people with disabilities, Jolly says. "Because of their unique needs most dental offices don't feel like they're trained or equipped to care for these people, so they don't have an interest."

It's a sad fact that Matt Messmer discovered the hard way.

"When I was growing up, we had a dentist that took care of my whole family," he recalls. "But as my disease progressed, he eventually reached the point where he didn't want to see me anymore. So we all had to find a new dentist."

Who signs the check?

There's also a large financial issue, especially for those who don't have dental insurance or are living on disability income.

"Dental work isn't covered by Medicare," Jolly explains. "Medicaid covers dental but even though it's a federal program, it's state administered, so it changes from state to state. And very few dentists will participate because it pays so poorly.

"A lot of dentists have more than enough patients out there banging on their door to come in and pay a full fare," he adds. "That's why people still don't want to treat this group of patients that can be difficult to work on, and take more time. They would rather get the big money for the easy stuff."

In fact, a recent report issued by the National Conference of State Legislatures suggests that the percentage of dental practitioners who participate in state Medicaid programs can be as low as 18 percent (in Alabama). Other states such as Nebraska, North Carolina, and North and South Dakota boast participation rates of more than 100 percent, as a result of dentists participating in Medicaid programs across state lines.

Challenges for the dentist

Those dentists who do take patients with disabilities must be prepared to meet a variety of physical challenges. "Depending on the level of incapacitation, you might need bite blocks, and postural positioning can be difficult because they can be hard to transfer from wheelchairs," Perlman explains.

He notes also that the use of general anesthetics can be dangerous for those affected by neuromuscular diseases. But local anesthetics, such as novocaine, used by most general dentists, present no more risk than they do for any other patient, he says.

Perlman and Jolly agree that there's also a chronic lack of instruction at most dental schools relating to the issues of caring for people with disabilities. And the problem is getting worse, not better.

"The American Dental Association has removed from the dental school curriculum requirements any specific commentary relative to special patients," Jolly says.

Perlman adds, "The Council on Dental Education actually took out the wording that dental schools train people who are proficient in dental care for people with special needs.

"The emphasis in dental education today is less in the area of special care than it was 25 to 30 years ago," Perlman claims, "probably because they want more time in the curriculum to teach things like implants and cosmetic dentistry stuff, which is what the public wants."

Finding the right dentist to meet your needs will probably require considerable effort and persistence on your part — so what else is new?

But dedicated and compassionate professionals are out there, even for the most troublesome dental problems.

Open please

Russell Wang is a maxillofacial prosthodontist and an associate professor at the School of Dentistry at Case Western Reserve University in Cleveland. Most of Wang's practice involves surgical repair of facial deformities and damage caused by radiation and chemotherapy in treating cancer of the head or neck.

Recently, Wang received a referral from the office of a local dentist. Linda Cotman, 50, who has SMA, was complaining that contractures of the muscles in her jaw were making it increasingly difficult for her to open her mouth, even at mealtimes.

"I've had this problem for many years," she laments. "But none of the dentists or doctors ever had any solution of what to do."

Linda Cotman uses the Therabite device to improve the range of motion of her jaw muscles.

Wang prescribed the use of a device called the Therabite. Cotman inserts the device into her mouth, using it to literally pry her mouth open.

"There's a lever that you press, and it opens up and you hold it for about seven seconds, then you rest," she explains. "It doesn't even hurt." Cotman uses the device two to three times a day to help maintain flexibility and range of motion in her jaw.

Of course, getting her health insurance to help pay for the device was, well, like pulling teeth, and her dental insurance wouldn't even consider it.

"It cost about $780," Cotman recalls. "We had a hard time getting the insurance to even agree to cover it, but we went through appeals and finally they agreed to cover it. But they still only paid maybe $400-something."

The device proved to be well worth the cost, and the effort.

"I've been really pleased with it," Cotman says, adding that she noticed significant improvement right away. In fact, her only regret is that she didn't seek help for her problem sooner.

"My dentist wasn't even able to do fillings for a while, because I couldn't open my mouth," she recalls. "Now, finally, they've been able to start to get in there to do some work, which is a good thing. I've had to have several teeth removed because they weren't able to work on them before."

"Many of my patients have the complication of a limitation of mouth opening," Wang explains. "But we had never tried this type of treatment for a patient with a neuromuscular disease."

Dental practice

For Wang, approaching a new patient with a neuromuscular disease is a simple matter of understanding the patient's disease and coordinating treatment with the patient's physician.

"The type of neuromuscular disease should be identified, and the physician should be contacted. Also, a list of medications should be obtained, so the dentist can be familiar with all those medications," Wang advises.

"Then, before any dental procedures are to be performed the dentist should inform the physician as to what they're going to do, and what kind of drugs or medication or injections they're going to give to the patient. I think that's important — particularly for general dentists, since most of them don't deal with this on a routine basis."

Propping his right arm on the bathroom counter, Matt Messmer uses an electric toothbrush to clean his teeth.

Perlman's advice to dentists contemplating treatment of a patient with a disability is simpler and a bit more direct:

"Treat them like any other normal, healthy, intelligent patient that you have in your practice," he says. "Just be prepared to take a little longer.

"Sometimes you may need a mouth prop to hold their mouths open because they can't hold them open themselves," he adds. "Other than that, dentistry is the same."

Keep smiling

Ultimately, proper care of your teeth and gums requires a daily commitment, whether you do it yourself or with help from a caregiver.

"There is no getting around the need for brushing, flossing and cleaning your teeth — or having somebody do it for you — three times a day," Jolly asserts. "If you don't do that, you're going to have troubles. And there's no guarantee you won't have trouble even if you do all those right things. Just like anybody else."

The same holds true even for those who no longer use their mouths.

"Even if the mouth isn't being used to eat, it still needs to be cared for," Jolly adds. "A feeding tube makes no difference in the need for brushing and cleaning the mouth. The mouth will still decay and be a big problem if you don't take care of it."

Linda Cotman offers this advice:

"Take care of your teeth. And if you have problems like the one I had with my jaw, it would be beneficial to get them taken care of, the earlier the better. Don't let it get as bad as mine ended up being."

It's been said that a smile is a light in the window of the soul indicating that the heart is at home. Of course, one can also buy a T-shirt that reads, "Smile, and let the whole world wonder what you're up to."

Whichever way you choose to look at it, just remember that a healthy smile is important — not just as a social statement, but as a key to overall good health.

Dental Care Resources

A May 2000 report issued by the U.S. Surgeon General titled "Oral Health in America" identified several challenges that people with disabilities face in trying to maintain good oral health.

Describing the "inequities and disparities that affect those least able to muster the resources to achieve optimal oral health," the report reaches the following conclusion:

"The barriers to oral health include lack of access to care, whether because of limited income or lack of insurance, transportation, or the flexibility to take time off from work to attend to personal or family needs for care. Individuals with disabilities and those with complex health problems may face additional barriers to care."

But dedicated professionals like Steven Perlman and Daniel Jolly are working hard to change that, through the Academy of Dentistry for Persons with Disabilities.

Carolyn Fetter of Hampton, N.H., is a member of the academy's Board of Directors, and serves on the Board of Visitors at the Boston University Goldman School of Dental Medicine.

Fetter, who isn't a dentist, spent 14 years working for Johnson & Johnson, where she was named general manager for the company's professional dental division.

During that time she met Steven Perlman, who invited her to spend a day at his practice, observing firsthand some of the challenges dentists faced in treating people with disabilities.

"When I saw what Dr. Perlman needed to do to give them the same quality of care that he provided to all of his patients, I saw how much need there was for the project he was undertaking," she recalls.

Specialized products

Today, Fetter is president of Specialized Care, a company dedicated to marketing dental products that facilitate the delivery of oral health services by professionals or caregivers.

"One of the products that I saw Dr. Perlman use was a makeshift item to keep the mouth open," she recalls. "I was appalled that the world of marketing had not provided him with a better option."

Thus, the Specialized Care Co. was launched, with its first product — the Open Wide Mouth Rest. Fetter invented this item, which helps dentists and caregivers keep the mouth open while tending to the teeth.

Fetter also offers an Oral Care Kit, which includes four mouth rests, the Surround Toothbrush (designed to clean several tooth surfaces at once) and an 8-minute video called "How to Brush the Teeth of Another Person." The kit retails at $24.95, while the Surround Toothbrush is available alone at $4.95 each or $49 for a dozen. The disposable Open Wide Mouth Rests start at $10 for four.

Kay Verbrugge is a longtime dental hygienist in the Grand Rapids, Mich., area. While searching for products that could be used by people with limited mobility to clean their teeth, she came across the MYO-Munchie.

Invented by Kevin Bourke, an Australian dentist, the MYO-Munchie is made of a hybrid silicone latex and features hundreds of tiny projections on its inner surfaces to provide a cushioned force to the teeth and gums. When chewed vigorously with the lips together it also exercises the craniofacial muscles and encourages nose breathing.

Delighted with the results she saw in her patients, Verbrugge had only one problem: The devices could be difficult to obtain. So Verbrugge became the official U.S. distributor for the MYO-Munchie. Available in three sizes, the MYO-Munchie costs $24, plus $4 shipping and handling. For more information, call (616) 247-7850 or visit www.teethperfect.com.

The Collis-Curve

In the mid-1970s, Minneapolis dentist George Collis was looking for a simpler way to help caregivers brush their patients" teeth. And when Collis couldn't find one, he invented his own.

The Collis-Curve features gently curved bristles, and is designed to be used in a horizontal, back-and-forth motion, rather than the traditional, yet more difficult up-and-down motion.

The Collis-Curve brushes are available at $26 per dozen for kids or adults. Call (800) 298-4818 or go to www.colliscurve.com.

Therabite

For information about the Therabite Jaw Motion Rehabilitation System, which Linda Cotman found helpful, call (610) 429-4545 or go to www.therabite.com.

Still haven't found the right product to meet your dental needs? Fetter wants to hear from you.

"If we don't have it, we'll find it," she says. "And if it's not already out there, we'll develop it ourselves."